Vulvodynia Support
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» Hope to all my suffering ladies
New here looking for advice EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
New here looking for advice EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
New here looking for advice EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
New here looking for advice EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
New here looking for advice EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
New here looking for advice EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
New here looking for advice EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
New here looking for advice EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
New here looking for advice EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


New here looking for advice

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Heidi
Kriskin
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Post  Kriskin Wed Aug 17, 2011 1:11 pm

Hi,

I was just diagnosed with vulvodynia about 2 weeks ago although I've been experiencing it for years. I'm 22 and I'm finding it hard to deal with, especially when it comes to my boyfriend. It's turned sex into something I often don't want to even try and I feel like that's pretty unfair to him.

I'm having a pretty bad 'flare up' right now and I think it's because I was wearing pads that have scent in them while riding a bike. I'm very swollen and even using toilet paper after peeing hurts a lot. I'm not going to use these pads again.

Any advice on how to bring the swelling and pain down would be greatly appreciated. And what can be used during menstruation? I can't wear tampons or pads. Currently I'm using a clean pair of underwear that I cut up as a home-made pad.

Thanks


Last edited by Kriskin on Wed Aug 17, 2011 1:15 pm; edited 1 time in total (Reason for editing : Added something)

Kriskin

Posts : 3
Join date : 2011-08-17
Age : 34
Location : Nova Scotia, Canada

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Post  Heidi Thu Aug 18, 2011 3:35 am

Home-made pads can work pretty well. Try a more absorbent, soft fabric like flannel or cut-up cotten sweat-pants. You can put a slip of waxed paper between a home-made pad and your underwear, too, if you want a little more leakage protection. A sitz bath with epsom salts or baking soda can be soothing (use lukewarm water). You can use a squirt bottle with water to rinse off after urinating instead of TP. You can fill a condom with water and make an "ice pack," just don't let it contact your skin for very long or you can damage the tissue. You can also just run an ice cube over the outer skin. Stop using any product with dyes or fragrances. . . These won't cure you, but each can give temporary relief when you are really raw and inflamed. Oh, some women also use "barrier" creams like A&D ointment. I never had much luck with this but I have friends who have sworn by it.
Heidi

Heidi

Posts : 28
Join date : 2011-07-17
Age : 55
Location : Missouri, USA

http://lowoxalatefamily.wordpress.com

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Post  Mouse Thu Aug 18, 2011 4:09 am

Hi Kriskin and welcome!

Sorry you have (ended up) started your V journey here Very Happy You are in good company!

Be kind to yourself. Your inability to have sex at the moment is not your fault. I'd suggest finding a therapist if you don't already have one. It can be helpful for your partner as well. I have a sex therapist, she gets it. I have a generalised unprovoked V so my issues are different but finding someone with specific knowledge it really helpful.

Have a look around, there are loads of great tips on here. Do you have a referral to a pain clinic? PT etc?

Any questions just sing out, we are all here to help.

Vicki

Mouse

Posts : 303
Join date : 2010-09-09
Location : New Zealand

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Post  Chinchilla Fri Aug 19, 2011 8:54 pm

Hi Kriskin,

I find that different brands of pads are better than others. For example, I always use Kotex because they are more cloth-like, and I never use Always, because they are more plastic-like. Also I try to rarely use pantiliners, because I find they are worse than pads, and as soon as my period is winding down I quit the pads, too. I'd rather get my underwear a little dirty! tongue I also only wear white, cotton underwear.

When I am having a flare-up, I find that squirting some water (I keep a plastic squeeze bottle filled with water under the bathroom sink) on my skin after peeing really helps. Also, this doesn't always work for me, but it's worth a try when you have a flare-up: Mix a little Aveeno Soothing Bath Treatment powder with some water, keep in the fridge, and dab on to your skin. But keep in mind that if you are continually trying all sorts of different remedies, you could end up irritating the skin more and sometimes it is best to just leave the skin alone until it calms down on it's own (easier said than done, I know!).

Here are some other tips as far as preventing pain that work for me:
-Never use liquid laundry detergent. I use Norwex Ultra Power Plus powder detergent.
-Always wash panties separately from other laundry.
-I have to wear loose pants Mad No skinny jeans for me Sad
-I can't sit on any hard surfaces (like wooden chairs).
-Never drink/eat anything acidic, for example orange juice!!! Pop is also a no-no for me. I go easy on spicy food, too, and drink lots and lots of water with it.
-Sorry if TMI (but come on, this is a website about vulvas, lol) but use your hand and not a washcloth when showering. Washcloths can be very abrasive. For soap, I have found Dove Sensitive Skin to be the best.
-Go commando at night. It is good to let the area air out. This is especially helpful if you are prone to itching as well.

I wish I could give you more advice on calming down flare-ups, but I would say if you can just don't make too many commitments and if you can, just stay home and take it easy until it fades.
Chinchilla
Chinchilla

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Join date : 2010-03-16

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Post  Helpwithpain Wed Aug 24, 2011 6:49 pm

hi there,

I'm new here as well and just posted my first blog. I'm right there with you that I feel terrible that sex is so painful that I almost fear it now. My fiance is so understanding but i still feel bad. I know it's not my fault but I also want him to feel like I want him. I try to suffer through it sometimes but honestly after it's over not only do i feel like i just got stabbed but I know it was terrible... can't do all the fun things I used to and really just want to get back to sex being fun!

Helpwithpain

Posts : 3
Join date : 2011-08-24

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Post  Zazu Fri Aug 26, 2011 12:24 pm

Hi to both Kriskin and Helpwithpain,

Welcome to the forum Smile It's been a huge support to me and the ladies on here are just wonderful! I can relate to both your comments, especially about having sex with your partner/fiance. I'm 25 and have moved from vulvar vestibulitis (also called provoked vestibulodynia or localized vulvodynia) - the one where penetration feels like burning stabbing pain - to also having more generalized, unprovoked vulvodynia. We haven't been able to have sex for over a year now as the pain is too unbearable.
We saw a really great sex therapist/couples' counsellor together and here are some thoughts about it all that I learned. First, it's important to stop trying to have intercourse if it's painful - especially for a set period of time. Take it off the table for, let's say a couple of weeks or a month. Otherwise, you'll begin to associate intimacy with pain, crying and loss and this can have more than just a psychological impact - many women with vulvodynia end up with vaginismus if they repeatedly have painful sex. Your muscles seize up in anticipation of the pain - it only makes sense. Second, try to make specific time for intimacy. We have this myth in our society that if it's not spontaneous it's not genuine - but when you have chronic pain, it's the loving thing to do. Finally, when you are intimate, explore 'outercourse' (foreplay). Most men are perfectly happy with what hands and lips can do. More importantly, it's not really lovemaking if it's causing one person extreme pain, is it? Then, you can gradually reintroduce intercourse if you're able to - but only at those times when you're really aroused, not having a flare up and know it won't hurt. Finally, counseling is really helpful!!
A pelvic floor physiotherapist will help you the most with sex. Hope those thoughts were a bit helpful!
Best to you both!
Katie

Zazu

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Join date : 2011-04-05
Location : Canada

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